New EpiWatch Research Study!

One of our favorite organizations, CURE (Citizens United for Research in Epilepsy) is assisting Johns Hopkins in promoting its EpiWatch research study which will collect data about seizures and seizure treatment. The intent of EpiWatch is to provide those with epilepsy a means to track seizure activity, medications, and possible triggers or side effects as well as alert family members or caregivers that a seizure is about to start for those who have auras. This information will be viewable via a dashboard. The dashboard and summary of the data can be shared with doctors and caregivers, if desired. The Johns Hopkins research team wishes to collect data that will help them evaluate if a future app could detect tonic-clonic seizures and contact caregivers, all using an Apple Watch.

As most HH patients and families are well aware, there is still much to understand about seizure detection from the people who experience them first-hand. This is why CURE has asked for the HH Community’s assistance. They have asked us to help in raising awareness about this research study by distributing the attached flyer throughout our media channels. Eligible participants will be screened by Johns Hopkins and will be given a free Apple Watch and instructions to download the EpiWatch app. Upon download, participants will consent and help Johns Hopkins in collecting a variety of research data including movement, heart rate and medication information that will ultimately help influence the creation of an app. Study participants will also have access to multiple educational resources about seizures and their management.

This data could help pave the way for reducing the risk of SUDEP, as well as potentially changing treatment options for individuals.

Please notice that the study is focusing on tonic-clonic seizures. At this point in time we do not know of a device like this that is capable of detecting gelastic seizures. However, with the advancement of a technology like this –learning to understand the larger seizures may eventually lead to detecting triggers and electrical activity that may follow a gelastic seizure.

As an aside – we do have an HH family that has some experience with a similar device called Embrace. Here is Kathy Jensen’s reporting of their personal experience:

“Colby uses the Embrace. It is very similar to the EpiWatch. Embrace has tested their "watch" in the EMU and have a good record of detecting tonic-clonic seizures. For us, it is just a peace of mind thing. Some of the down falls we have noticed in our day-to-day activities: Colby is too active during the day to wear it as repetitive motion will activate a seizure alert. It does not pick up gelastics or complex partials, but they are working on the complex partials. The Embrace must be close to the cell phone that has the supporting app to enable it to call if a seizure is detected. I use my phone and put it by his bed at night. It does also have problems with connectivity which they are working on. It does not help that Colby tosses and turns most nights. They have an Embrace Mate app that will track your seizures, sleep and activity. It will also tell the caregiver who is alerted exactly where the patient is currently. It is a really good idea, but not as reliable as I think it should be. I think for adults it would work better, especially during the day. Having used the Embrace for a couple of years, I realize it is a very complex device to create. The product we have is not considered a testing product but they continue to improve the product with the feedback from their customers. They have spent the last six years working on this. I am hopeful that John Hopkins will continue to improve this technology"

Hope for HH would love to hear from anyone currently using the Embrace or participates in the EpiWatch Study! Please share your experiences on our Facebook page or send an update to info@hopeforhh.org!